Rich Beyond Measure

I will never forget the first time I stepped foot at Southbury Training School, Connecticut’s last remaining warehouse for the disabled and mentally ill. I was 22, completely green, and determined to change the world for people with disabilities. I had ascended the hill of the sprawling campus in my Honda Accord hatchback emblazoned with bumper stickers, including one that read: “Subvert the Dominant Paradigm.”

I remember so clearly that it was a beautiful, sunny day outside. I noticed the large brick buildings built in the 1940s, now in great disrepair and covered in ivy growing wild. There were dilapidated swing sets and play sets around the buildings left from the days when children lived there. These buildings, or “cottages” as they were called, housed upwards of 35 people at a time.

During my first tour of the grounds, I was taken around by my advocate partner who would work with me on the assigned cases. I recall standing in one of the buildings for the most physically and cognitively disabled residents, thinking I could not believe my eyes. In the dormitory where the clients slept, I saw cold tile floors, plain grey cinderblock walls with no personal effects, beds lined up head to toe around the room, at most a few inches away from each other. The bathroom was a large room with toilets and no stalls. In another large room, there were showers and a couple of tubs, again no stalls or curtains.

I was then taken into the “day room.” On the floor around me were people lying on mats, some moaning, their arms and legs contracted from years without therapy or exercise. One attendant milled around. The stench of urine and feces was overwhelming. I was reminded of a Mahatma Ghandi quote: “A nation’s greatness is measured by how it treats its weakest members.” By this standard, we as a culture were failing miserably.

I vividly recall looking out the window at the bright, sunny day and then looking in towards the room and having a career-defining moment. It was practically an out-of-body experience. I looked up and said to myself silently, “If there is anything that I do with my life, it will be to make this go away.” This statement is the standard by which I rate my work every day. Before I go to sleep at night, I ask myself, “Did I do something today to make that go away?”

Working at the institution as an advocate was an eye-opening experience and invaluable education. I saw some things that will be forever burned onto my brain. Terrible things that one could never imagine. As an advocate, I was assigned overflow cases from the state investigators. I also worked with residents moving out into the community so that they could live their lives outside the four walls of an institution.

In 1994, in preparation for a class action lawsuit being brought against the state to close the institution, my partner and I were responsible for reviewing old files, gathering information, interviews, and facts to be used in the class action. It was all very “Thelma and Louise” meets “Erin Brokovich.” It was an emotionally-charged time, as word got out that a lawsuit was being brought to move people out and, in effect, to close the institution. During that time, on occasion I received threats and anonymous phone calls. I routinely checked my car tires before leaving for the day. I testified in hearings where I was booed and hissed at. In 1996, the class action suit was brought against the State of Connecticut to close Southbury Training School. A few months ago, in an act of narcissism, I googled myself and my testimony from one of the hearings came up in the search. After I opened it with a bit of trepidation, I was pleasantly surprised to read that what I wrote 18 years ago is exactly what I would say today.

Some years and several positions later, I went to work for an agency that is now called Ability Beyond Disability, an organization that serves over 1,500 individuals in Connecticut and New York and provides many different services so that people can remain as independent as possible while receiving the support they need. Some people use Ability Beyond Disability services for as few as two hours a week and other people use our services 24 hours a day.

I will never forget seeing one of my advocate friends at a meeting shortly after I was hired. Upon learning that I was now working for a service provider, supervising residential services for people with disabilities in the community, she admonished me for taking the leap into service provision from advocacy. She told me that I had “turned to the dark side,” that I had abandoned my vision for advocating change for persons with disabilities. I staunchly defended my decision, stating that I believed in the core values and mission of the agency and that I remained true to my vision as an advocate in the work that I do every day. I listened to her criticism, but I knew in my heart I had made the right decision in my career.

Fast forward 11 years and two promotions. I remain with Ability Beyond Disability and oversee programs and services in Connecticut on an administrative level. My friends with high-powered careers and huge salaries joke with me and say things like, “Pam, it’s great to be Mother Teresa, but it won’t make you rich.” I strongly disagree. I will give you an example of the riches I experience in my daily work life.

A few months ago, I was asked to go meet a young woman, Rose*, who had been placed in a terrible nursing home in Wethersfield, Connecticut. Rose had lost her group home placement due to a severe medical condition and had been at the nursing home for two years. She was blind as a result of her medical condition and limited verbally. When I saw her, it was apparent that she was heavily sedated. She was wearing “onesie” outfits because the staff reported that she “stripped” her clothing and bed linens. She was lying on a bare mattress with nothing to do and no interaction with others. She was very thin, even though staff reported that they fed her because she took too long to eat by herself. She never left the nursing home.

As I left the facility with my team, I said, “We’re going to get her out of here.” Rose was placed on my agency’s waiting list and when an opening came up in one of our lovely six-bed homes, it was hers. Last week, while conducting a tour in one of our group homes, I met Rose again, for the first time since she had been in our care. She no longer needed the “onesies,” as it turned out the staff at the nursing home would not walk her to the toilet, so her “stripping” was to remove her soiled clothing and bed linens. Her medications had been adjusted; she was now sleeping more at night and was increasingly alert during the day. She had gained weight, her hair had grown, and she looked beautiful. She goes into the community with her support staff to get coffee, a favorite meal, purchase new music, or do some shopping. Her quality of life has changed drastically for the better. As I visited with her and her support staff in her bedroom, purposely painted bright yellow for her vision and beautifully decorated with pictures of flowers, I was almost brought to tears, seeing her alert, dressed in a sharply-coordinated outfit, and singing to her music. No amount of money can compare to an experience like that. I am rich beyond measure.

Finally this past year, the STS lawsuit was settled. There is now a mandate to educate families and clients about transitioning to community-based services, and the plan is for STS to be closed within five years. I was asked by my agency to participate on our outreach team to the institution. As I sat around the table a few weeks ago talking about strategic planning for the outreach project, all my memories of working as an advocate at STS came flooding back. I remembered my advocate friend criticizing me for my decision to move into service provision. I felt an overwhelming sense of my career coming full circle and my career decisions being validated.

That night before I went to bed, I asked myself my daily question: “Today, did I do something to make that go away?” Absolutely.

*Name has been changed.

Photo provided by Pamela Arturi.

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I wish I had more time to comment but I can’t just click “delete” after reading this without at least thanking you for your candor, your caring, and the absolute truth that we can be “rich beyond measure” without many thousands in our bank accounts.

Pamela Arturi gets us walking the corridors alongside her, picking up foul odors and fouler treatment of the most vulnerable citizens in society’s care. Like the back side of the moon that we never glimpse, these individuals exist out of sight and out of mind for a majority of us. It is encouraging that Ms. Arturi and others like her are strongly advocating for the honorable treatment these folks deserve. After all: they were born this way (unless they had a horrible accident). What is our excuse for being aloof about their suffering? There is no valid reason in this day and age for people to lack proper care. As a modern society, we need to work on this.

Your story is amazing. I am glad to know people like you are out there. My mother started out in a similar capacity, but financial need pushed her into a different career, working as a special ed teacher in a private school. Wanting to be ‘rich’ and needing to make a living wage are two different issues, and I only wish that more advocacy positions in high-need areas could offer the latter.

Having just recently had the opportunity to know Pam better, I can tell you she is devoted to what she does, her energy seems endless, long hours and no complaining about all the interuptions in her day. I thank God daily for people like Pam and her organization, it allows people like me to sleep at night knowing our loved ones are cared for and not in the way that Pam described in the beginning of her story when she told about conditions at the Training School. I too, had a similar experience at Southbury Training School, it frightened me so and since my husband and I had elected to keep our child home rather than subject him to that lifestyle I thank God everyday for Ability Beyond Disability. If ever there was a “snake pit” Southbury Training School in those days was it. I do like to believe as I see some of the residents in the community that things have changed there very dramatically but it is still an institution Nothing compares with the family settings provided by Ability Beyond Disability. I could babble on more but I just want everyone to know how caring Pam is.

This was the driving force behind why we started “The Dot”. Every time i read your interviews here, I feel so much more strongly for what we are doing. Thanks Kate for sharing these wonderful stories:)